Musings on Mesothelioma

Menu

Monthly Archives: June 2016

I just returned home from a wonderful trip to Vancouver. I was there to visit my old high-school friend and to celebrate one and a half years of stable cat scans. I went solo, sans partner, because I wanted lots of girly time. It was a very emotional experience. I hadn’t seen my friend – we first bonded in 1986! – for six years and I hadn’t been to Vancouver for twenty years. Vancouver’s beauty is awe inspiring. It’s the kind of beauty that makes you believe in God, even if you’re not religious.

At Toronto’s airport security line I was asked to step aside to a private room so that they could inspect my ileostomy bag. I had explained to them that I had a “medical device” on my stomach. Looking back now, using the word “device” probably wasn’t a good idea. It kind of has a nefarious, “red flag,” Homeland Security sound to it, lol! (note: on the way home I said nothing and they waved me straight through security). Two lovely security ladies escorted me to a sectioned-off cubicle where I raised up my tunic and camisole to reveal my somewhat mangled, scarred tummy and Ron’s unfortunate looking beige click-on bag (Ron is my stoma!😀). Style note: There should be Wonder Woman themed ileostomy bags, I would definitely pay extra for those! How much more fun and empowering would it be to see yourself with a mini version of Wonder Woman’s outfit on your belly everyday?!

One of the security officers, (very young), couldn’t hide her surprise/confusion/horror when she looked at my bag. Poor thing, I think I traumatized her. I told the officers I had cancer, that that was the reason for the bag (I occasionally use the “cancer card” and I feel no guilt in doing so). The older of the two ladies was lovely. She looked at me with compassion in her eyes and she said: “Pray. Pray and you will be healed.” She was clearly a believer and I appreciated her kind words. Since going to Catholic School for first & second grade, I have been praying every night. In fact my nightly prayers are long and exhausting because each day I seem to add a new person to my prayer list. I find praying to be comforting, meditative and it allows me to take a moment to express my gratitude, which I think is important. But do I think praying will save me? No, no I do not.

The trip was full of laughter, amazing conversation & good food (except for the Gluten Free cake – never again!). I did get a tad worried when I noticed a critical mass of crows – there were crows everywhere! And every night at sundown the crows gathered together and flew by my friend’s house on their way to their nighttime retreat – which strangely enough was the TV studio my friend works at. Watching the crows swoosh by my window was a bit unsettling. I found myself wondering if they knew something that I didn’t: perhaps my Mesothelioma had mestatisized and they were coming to devour me?

Also on my worry list – my worry list is as long as my prayer list – were bears. Vancouver is surrounded by forests and mountains – it looks like the movie “Twilight,” – I half expected to see Edward jumping Vampire-style between the trees. But with all that lovely nature comes many bears! My first night there I read about a treat-seeking bear who had trashed a Lexus to get to a box of protein bars! A few days later I found myself waiting for my friend in her SUV. We had packed snacks and I suddenly realized that the residential neighborhood we were parked in was surrounded by forest – EEK! I quickly jumped out of the car and joined my friend – there was no way I was going to survive brutal abdominal surgery and chemo only to then be devoured by a bear!

On my way home, at the Vancouver airport, I started feeling very sad. I wondered if this would be my last visit with my old friend. Over the last year and a half I have watched as several of my Mesothelioma FB friends have died from this wretched disease. One day their scans are stable and the next day they are back in the hospital. Mesothelioma has a “bad rep,” it’s like the Hell’s Angels of Cancer. It’s known for being very aggressive and brutal. But for now I will just be grateful. Grateful for friendship, grateful for a stranger’s kind words and grateful for not being devoured by crows or bears.

My stoma, Ron, is always busy spewing out everything that I eat and drink. It is exhausting keeping up with him – staying hydrated and nourished is practically a full-time job. Though Ron has resided with me on my tummy for a year and a half now, I am still not 100% comfortable bringing him out of the house.

Emptying Ron’s beige click-on bag in a public washroom is stressful. First of all, I don’t like to be rushed and women’s bathrooms always have lineups. It takes a few solid minutes to smoothly and cleanly empty the bag. With ileostomies the “output” tends to be very liquid, so you have to line the toilet bowl with tissue, otherwise there will be a splashfest of gnarly!! Then you have to make sure that the opening of the bag is perfectly clean before you roll and seal it back up, otherwise you risk burning your skin or ruining your clothes. (Been there, done that!). Finally, there is the always humiliating scent. Ron, like most stomas, could use a lesson or two on pretty fragrances, perhaps a little lavender or mint to go with that “output.” The smell is shockingly hideous. I have a toilet bowl spray called “Poo-Pourri” and though it does help, (if you spray twice the suggested amount), it is expensive and most people with stomas probably won’t have access to it. So going to a new restaurant or to a dinner party at someone’s house, I am now always filled with dread, as I don’t want Ron to ruin the vibe or people’s appetite.

Then there’s how to dress to conceal a stoma bag! Right before my cancer operation – when I got Ron – I had started wearing high waisted 70’s style jeans with fitted tops. It was a good look on me and it made me feel attractive. Now I have much more limited options. My go-to outfit consists of skinny low-rise jeans (the jeans hit me under the bottom of the bag), a snug stretchy camisole to kind of “flatten down” the bag and a loose, longer top. Thankfully I can pull off this look, but as someone who enjoys clothing I hate not having more options. Plus, even when concealed, the bag can fill up quickly making you look lump-sided. The other day I had lunch with my lovely cousin and by the end of eating I was tenderly holding Ron’s full bag – I was cradling it as if I was cradling a miniature alien baby! Whether I was comfortable or not I was forced to empty Ron’s bag at the restaurant or risk having it explode. No one can prepare you for the strangeness of having a stoma. It is heartbreaking, lifesaving and funny all at once.